Legacies and Relationships: Diverse Social Networks and <i>BRCA1/2</i> Risk Management Decisions and Actions

Ersig, Anne L.; Werner‐Lin, Allison; Hoskins, Lindsey; Young, Jennifer L.; Loud, Jennifer T.; Peters, June A.; Greene, Mark H.

doi:10.1177/1074840718815844

Cited by 11 publications

(5 citation statements)

References 45 publications

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“…The person (s) occupying it promoted among their relatives the importance of maintaining regular medical appointments for cancer risk management and served as an LFS information disseminator by sharing facts and personal experiences. Parents occupying this role highlighted direct involvement in their children's lives by engaging in communal cancer risk management, especially if both parent and child had LFS (Ersig et al, 2019), and attending doctor visits with them to facilitate decision-making. These findings are consistent with previous research indicating that older generations in families with hereditary cancer predisposition syndromes often actively engage in younger generations' health care by encouraging their younger family members to seek cancer screening (Ashida et al, 2011).…”

Section: Discussionmentioning

confidence: 99%

Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations

et al. 2019

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Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others' medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives' psychosocial and medical needs by understanding how living with LFS influences the family system's functioning and facilitating members' support for each other.

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Section: Discussionmentioning

confidence: 99%

Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations

et al. 2019

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“…Strong numeracy skills increase an individual's ability to interpret complex information related to cancer risk, which is essential to making decisions about prevention and treatment (Fagerlin et al, 2011;Lea et al, 2011;Malloy-Weir et al, 2016;Ross et al, 2018). Having the ability to make informed decisions about genetic testing may be impeded by insufficient information, time pressures, and psychological stress from the decisional process (Ersig et al, 2019;Grimmett et al, 2018;Hesse-Biber et al, 2018). Poorly informed decision-making can lead to feeling overwhelmed and poor psychosocial outcomes (Mazzocco et al, 2019;Postolica et al, 2018) including feelings of uncertainty (Han, 2016), decisional conflict (Rini et al, 2019), and questioning of moral values (Reyna et al, 2015;Zikmund-Fisher et al, 2010).…”

Section: Literacy and Decision-makingmentioning

confidence: 99%

Racial Disparities in Breast Cancer and Genomic Uncertainty: A QuantCrit Mini-Review

Gerido

2020

Open Information Science

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African American women are 39-44% more likely to die from breast cancer than white women. This stable racial disparity in mortality rates has persisted since the 1980s and is unlikely to improve unless specific factors leading to disparities are discovered. Racial health disparities should be understood in the context of stable racialized social structures that determine differential access to information. The purpose of this study is to consider how recent quantitative studies using HINTS data might benefit from a critical race agenda to capture the nuances of African American women’s information behaviors, genetic testing awareness, and testing for BRCA1 and BRCA2 gene mutations.

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“…However, how patients define legacy, what it means to them, and how that meaning informs medical decisions are not well understood. A preliminary literature review suggests that people facing serious illness such as cancer consider legacy when making medical decisions, for example, forgoing expensive treatment with limited or unknown clinical benefit to preserve one’s inheritance for their children [ 25 , 26 ]. Yet, very little is known about the role of legacy in the treatment decisions of patients across the continuum of serious illness, from receiving genetic test results that indicate a predisposition to serious illness to receiving a life-limiting diagnosis to choosing treatment options for end-of-life care [ 27 , 28 ].…”

Section: Introductionmentioning

confidence: 99%

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

Gray¹,

Banegas²,

Henrikson³

2022

JMIR Res Protoc

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Background Legacy—what one leaves behind and how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illnesses. A preliminary literature review suggests that patients facing serious illness consider legacy when making medical decisions, for example, forgoing expensive treatment with limited or unknown clinical benefit to preserve one’s inheritance for their children. To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide a comprehensive understanding of how legacy considerations relate to patient choices about their medical care. Objective The objective of this scoping review is to understand the extent and type of research addressing the concept of legacy by people facing serious illness to inform a conceptual framework of legacy and patient treatment choices. Methods This protocol follows the guidelines put forth by Levac et al, which expands the framework introduced by Arksey and O’Malley, as well as the Joanna Briggs Institute Reviewer’s manual. This scoping review will explore several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO, and others and will include legacy-specific gray literature, including dissertation research available via ProQuest. An initial search will be conducted in English-language literature from 1990 to the present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, 2 independent reviewers will undertake a 2-part study selection process. In the first step, reviewers will screen article titles and abstracts to identify the eligibility of each article based on predetermined exclusion or inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions or exclusions. During the second step, the full texts will be screened by 2 reviewers, and only relevant articles will be kept. Relevant study data will be extracted, collated, and charted to summarize the key findings related to the construct of legacy. Results This study will identify how people facing serious illness define legacy, and how their thinking about legacy impacts the choices they make about their medical treatments. We will note gaps in the literature base. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact the patient’s treatment choices. The results of this study will be submitted to an indexed journal. Conclusions Very little is known about the role of legacy in the treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide an understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be among the first to construct a conceptual model detailing how considerations of legacy impact medical decision-making for people facing or living with serious illnesses. International Registered Report Identifier (IRRID) DERR1-10.2196/40791

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Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions

Cited by 11 publications

References 45 publications

Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations

Family Health Leaders: Lessons on Living with Li‐Fraumeni Syndrome across Generations

Racial Disparities in Breast Cancer and Genomic Uncertainty: A QuantCrit Mini-Review

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

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